When Caregiving Falls To Family And Friends

It’s rare that I write about something personal, but I am making an exception here. I just spent the last five days as the sole caregiver for Jenny, a friend from childhood who lives in a very small town in the mountains of California. Jenny is 70 and has a rare form of cancer. Her condition is terminal and she knows it. At this point in time, she is mostly confined to a hospital bed in her living room. The cancer and the aftermath of some of the treatments have proved so painful that she is often unable to elevate herself to walk the 15 steps to the bathroom. Sitting is the most painful position for her and Jenny is a large woman, so the toilet isn’t her friend.

What “Care” looks like

When I say “caregiving,” I’m talking about the full gamut: bedpans, urine bags, and frequent linen changes in addition to preparing and serving meals, washing dishes, doing laundry, and maintaining upkeep of the small house in which she lives. Her cancer is in her pubic region, which is also where most of her pain comes from. This has necessitated a catheter and considerable care of that whole area of her body. She can do some of the medicating and hygiene herself, but much of it falls to the caregiver.

She also has to travel, by car, several times a month to a cancer center that is almost two hours away. In addition, she has to travel to a second medical professional in a different town that is also two hours away. This is extremely difficult for her, but she takes extra pain medication for the ordeal and this is yet another task for which she is dependent on friends, family, and/or neighbors.

Jenny is a solo ager. She has no partner or children to help with any of this. She does have a large family of siblings, nieces, and nephews and I am on an informal rotation with the female members of the family and other friends who love her and have volunteered to travel, by plane or car, to help out.

Jenny has been fiercely independent all her life and I’m certain she is not happy to be so dependent on others for help, but up to now she has been unwilling to pay for any professional help. Recently she made one concession and now has an aide who comes in for four hours a day, Monday through Friday, which is a great relief to whomever is serving as caregiver on the days she comes in.

Jenny lives modestly, but she isn’t poor. She is a bright, talented, degreed professional. She had a career as a scientist and saved enough money to retire when she was 62, assuming she would live at least another 20 years and possibly make a few more bucks doing some consulting and writing. Her social security payments are ample and she has a small pension from the work she did. The reason she is so adamant about not spending the money she has on her own care is that she wants to leave it to her nieces and nephews as part of her legacy. The nieces and nephews in question are doing okay on their own. They are taking an occasional turn with caregiving for their aunt and, if asked, might happily wish for Jenny to spend the money for an outside professional to do the heavy lifting described above.

Having studied, written, and spoken about Solo Aging for the past ten years, I was compelled to ask myself what I would do in this situation and how I would advise other Solo Agers to anticipate the need for this level of care. In my mind, it comes down to a rather crude question: do you really want your friends and extended family members emptying your bedpan and wiping your butt? Do you want this activity to be the last memory they have of you? My personal answer to both questions is a resounding NO!

Could this Scenario have Been Prevented?

Whether you are a Solo Ager or someone with family support, you may not want these kinds of personal hygiene tasks carried out by family members or close friends.

How did this happen to Jenny? She made several strategic choices in her life that made a big difference in how she ended up in this situation. The initial choice was to live her life in a remote location. Small towns are often quaint and quiet and lovely, but they typically do not have medical specialists readily available and may not have more than a small health clinic for medical support. Hence, Jenny’s cancer was rather advanced before it was detected.

Jenny lives alone and has chosen to be solitary much of her life. She hasn’t gotten to know very many people in town. She also chose a town that is rather isolated in location. The nearest city of any size is almost two hours away by car. Her closest family members are her three sisters. They all live in the urban area where Jenny grew up, which is 4 hours away, by car.

This kind of isolation is risky for anyone in later life, but especially for Solo Agers. Jenny’s only alternatives at this point are a skilled nursing facility closer to her sisters or round-the-clock home care by professionals, which may not even be available in her small town. Her current situation is unsustainable. Two of the sisters, who take on the lion’s share of the work, are both getting burned out and have lives of their own a long way from Jenny’s town. Friends are also getting weary of the rotation and are coming up with more and more reasons why they can’t fill in to relieve the sisters. Jenny expresses great thanks for the care she is receiving, but at the same time seems oblivious to the harm she is doing to her relationships by imposing this on friends and family.

I realize that a sizable number of people in this country are not financially secure and will be completely dependent on family for care, if and when they become ill. However, most people have choices and my recent experience with caregiving made me acutely aware of the importance of those choices. It is unclear what will happen to Jenny in the next few months as she continues to battle this cancer, but those of us who have been part of this story have gotten a glimpse of the kind of end-of-life we don’t want. We may not be able to avoid an ending that includes intense caregiving, but by careful planning and making healthy choices we can control who provides the care.